LiveLoveLaugh

Winter Again

2010-01-07T16:06:00.004-05:00

It's a new year and another winter. Once again I am wondering where the time went and why I don't post more often. It's all in my head, and I have lots to say, but I seldom make myself put it in type. I'm going to be making myself do a lot more this year, including posting.

I am starting to exercise again, which is an important part of my COPD treatment. I can take all of the inhalers and avoid crowds to prevent infections, but if I don't exercise, I will only decline.

Exercise builds muscles, which then work more efficiently, helping to keep oxygen going to the right places and decreases shortness of breath. I know this firsthand. But since exercise was never really a strong component of my life before COPD, it's hard to keep the momentum going now. I don't like to exercise and can come up with a million excuses not to so I have to be careful to keep myself motivated over and over again.

Megan is no longer touring with Matt Nathanson, and is nesting with her husband. It's pure pleasure to see this happen. She's happier and more content than I've seen her in several years. Selfishly, I'm hoping to be a grandmother one of these days very soon.

I've had some serious challenges over the past couple of years, but I think I've come out on the other side only slightly worse for wear. I want this year to be a good one, in which I will be productive and happy and content. It's up to me and I'm up for the work to make it happen.

~Eileen

Guilty Pleasures

2009-03-22T21:01:00.004-05:00

Tonight I indulged in one of my favorite guilty pleasures that very few people who know me know about - professional bull riding. I started watching during a time when I was home-bound and bored, having a hard time dealing with my broken bones on top of my COPD. My favorite at this time is Guilherme Marchi, a Brazilian rider who won last year's top spot in the world championship. I would like to see him be the first to win 2 in a row.

It all started innocently enough. I was so bored with television. I spent all of my time at home after I broke my right shoulder and left hip. It was impossible for me to get out except for infrequent vistits to the doctors so I was at the mercy of people who would visit me and the television for entertainment. Ha! I consider myself a fairly intelligent person, and finding something that held my interest for an hour was really a challenge. I watched the PBR and it made my heart beat faster. At first, I was thrilled with the prospect of a wreck. Those were awful and I was so impressed with how they came back so soon after devastating injuries. I continued watching it and I began rooting for particular cowboys that sparked my interest. Eventually, I learned what it was all about and began to admire the cowboys for their ability. They really are athletes!

This has all led me to watching Dancing With the Stars because Ty Murray, a bull riding hero, is competing. I voted for him 13 times by cell phone in the first 2 weeks! You have to understand, I don't EVER do this for ANYONE on ANY TV show.

So what started as a diversion, has turned into an obsession and a very happy guilty pleasure! I watch every week and follow the riders from week to week to see how they are doing. Don't tell anyone, but if someone calls me during a show, I ignore it!

2009-03-01T16:41:00.006-05:00

It's been a while since I posted to this blog. I seemed to have lost my voice for a while but I'll be working on that.

I was having a good couple of weeks with my breathing, but all of a sudden today it feels like I'm breathing through water. This merry go round is making me dizzy, the good days and the bad ones. But at least I had those two weeks!

My brothers gave me the greatest gift for Christmas: their time and tickets to see Kris Kristofferson. Kris is a long time hero of mine and I've been listening to his music since the 70's. So last Sunday we three went to a concert. And it was awesome! It was killer getting from the car to the theater, and we had to drive me eventually because I just wasn't good at walking through the snow and I ran out of breath long before we got there. The show was worth the effort and it was better than old times, being with my brothers.

Redemption

2008-10-01T13:00:00.004-05:00

My brother-in-law died. He spent a portion of his life being one of the biggest asses in the country. He was an alcoholic with a bad attitude and the ability to anger and alienate anyone in his path.

However, he spent the past 28 years living sober, and giving back in incredible ways. He built a business and became successful, providing jobs and opportunities to many people. He always helped family with taxes for free. He helped his entire family, and I add extended family to that, both with support and financing through their various struggles and hardships. He formed amazing bonds with his family that will be remembered forever.

I will never know how many people he's guided through recovery in AA. For many years, his home was open to struggling members who needed a hand up. He was a dedicated sponsor and leader for all of the past 28 years.

He did all this and more with unbelievable humility and modesty. It was HARD to get him to accept a thank-you; he never did it for recognition. Some would say he was arrogant, and I can agree to an extent, but it hid a heart that was bigger than anyone knew.

If anyone has earned the respect and love of multitudes of friends, business associates and family, he has. I have no doubt that he's breathing easy somewhere in the light. I hope he knows how much I came to care about him and how much I admired and respected his incredible road to redemption.

A Better Day

2008-09-19T16:31:00.005-05:00

I guess it's safe to say that things are better in my head. Thank-you, Dee, for the encouragement, I really appreciate it. Sometimes my mind just can't help taking a trip toward the darker side and it's a bitch getting stuck there.

I've started making a conscious effort to get out of here every day, even if it's just for a little PT Cruising. It's helped me a lot to get out of my own head and see other people and other places besides myself and my apartment. My world has been so small for the past few years, and most especially, the past year.

I am now independent with everything with few exceptions. I still can't go into stores because I'm not walking very far, but for everything else, it's all good. I've come such a long way over the past year, and I am truly grateful that I'm healing and breathing better. I tend to lose sight of that when I get down on myself and my situation. When I think about it, I know that I'm so much better off than many people.

So healthwise, for me things are definitely on the upswing, and each day is another new beginning, with new challenges and possibilities. I am working hard at being the best me I can be, and I hope that family and friends will forgive past no-shows due to illness and injury. It's been a lonely couple of years and I'm eager to participate more in life again.

An Awful Year

2008-09-04T11:03:00.006-05:00

I see that it's been a while since I posted anything. I might not post this one, but I have to write it.

It was a year, on August 25th, since I had fallen and broken my hip and my shoulder. It was on May 12 that I had the surgery on my hip. I was doing well and progressing steadily when I was told by the surgeon that I had to back off a little because the hip hasn't shown adequate healing yet. I knew that it could take up to 6 months to heal, but I didn't imagine the emotions that would come with the prolonged healing.

It's been just over 2 weeks since I was told to stop using the cane if I feel any pain. My spirits have gone steadily downhill since then because I feel pain every time I use the cane.

I am so tired of being home, not able to work, dependent on neighbors for shopping and being so short of breath. I feel like I live the life of someone just waiting to die. I want to swear, hit something, throw things, break everything breakable in sight. Instead, I sit here holding it all tight inside. I am the cheerleader for COPD and the picture of patience. Ha! I'm a seething cauldron of disappointment and fear for my future.

So I constantly beat myself up for not doing things. I could do more exercises, I could clean more, I could do something, anything, that would boost my spirits. Read a book, cook something, call someone. But I can't make myself do anything. And I hate myself for that.

There. I'll let you know if that helped.

Questions after the fact

2008-07-17T20:24:00.004-05:00

I had my surgery and came out on the other side intact. A couple of days of not remembering too much, a week of rehab, and then home to begin serious rehab.

I am so grateful that my respiratory status was okay during all of this, and now after a couple of months, I've been told by my surgeon that I can weight bear and begin to walk!

Now what? I was so happy after surgery, feeling less pain, and ready to move forward. Now I wonder what will happen after I can walk, and I am still left with crappy lungs. Once I can walk, will I still be paralyzed with the inability to breathe? Will I still gasp for air with every step I take? Those things can be such torture in and of themselves. Will I work and work and get my legs back only to be too tired from breathing to move?

Well, these questions remain unanswered, and only time will tell. I hope that with hard work, I will be rewarded with better breathing as a side effect.

Off to see the wizard

2008-05-04T16:27:00.004-05:00

After 9 long months, I am finally having surgery on my hip. I'll have a bone graft and a total hip replacement on May 12. Am I nervous? You bet! I'm handling it with all of the bravado I can muster. It's time to put it in someone else's hands now and go with the flow.

The nurse in me knows everything that could go wrong but the spirit in me knows I'm a fighter and will do the best I can.

I'll be back on the other side of surgery!

Sticks and Stones

2008-02-20T17:59:00.004-05:00

Just a quick note to explain where I've been. Ironically, my last entry was on August 25th. That was the same day that I tripped in my livingroom and broke my right shoulder and left hip.

The fracture in my left hip wasn't diagnosed until 10 days after my ER visit, and after I had walked for almost a week on it, causing major damage. I had to wait until there was some healing before they would consider surgery and now after 6 months, I have to have some major reconstruction done to the hip. And then I am told it will be another 4 - 6 months before I can do any weight bearing on it.

The past 6 months have been painful, frustrating and very discouraging. Often during this time, it was hard to see the light at the end of the tunnel or even the tunnel itself.

I think I've managed to get to this point with my mental state only slightly worse for wear and plan to have surgery soon. I haven't been writing because it's been too painful to sit at the computer for any length of time and frankly, I'm tired of talking about me. So I will save my story for another time.

But if you are reading this, please say a quick prayer for me that I get through this ordeal with 2 legs to stand on and my mind intact!

After the rant

2007-08-25T08:59:00.000-05:00

I feel better today after spewing all over the blog about how angry I was yesterday. I am going to pick up my pay and get to the bank before it closes at noon.

I have to admit that it felt good to lash out on screen rather than at everyone around me. No innocent bystanders were hurt in the production of that rant.

Today I can move on and feel some gratitude that I'm still standing, still breathing, and still feeling.

Rant

2007-08-24T14:32:00.000-05:00

I am so angry, and I hate that because it makes me so short of breath, which makes me even angrier. I am ranting about money.

I am on SSD, and get money monthly. It is a tiny fraction of what I was making as an RN,C. I work part time to feel productive, but let's face it, I need the money too. I just cannot make it from month to month on the disability. So I really count on getting paid for the hours I work. I put plenty of hours in which I don't get paid for, so when I submit the hours, I expect a paycheck. This is payweek, and I was told I would get a check yesterday. Didn't. I was told I would get a check today. Haven't. And this isn't the first time that I have expected a check and didn't get it until days later.

I have been broke for a week. I have no gas, no cat food and other things. I don't spend money on clothing or extravagent things for myself. I will now have to borrow money. I would rather pull my front teeth out myself without novocaine than ask for help. It makes me feel like a loser that I can't manage my finances without asking for someone else to contribute. I feel like I have to explain, and that makes me feel helpless.

I am so sick of paying outrageous prices for the meds I have to take because this country can't get it's act together so that we can obtain good medications at a reasonable price. I look to India to help me out with that.

And healthcare - don't get me started. After I left work, I could only afford COBRA for a few months. I don't qualify for MassHealth because I make "too much" money. I can't get Medicare because there is a 24 month waiting period once you get SSD. My oxygen bill is over $8,000. I owe my PCP and my pulmonary doc about $1,000. I owe the hospital over $7,000 for a 2 day stay for pneumonia last month. Too much money just isn't in my vocabulary.

So while I am waiting for a check that I earned and need, I am full of hostility and anger that it isn't HERE NOW. Right now what I'm going to do is take a deep breath and try to breathe normal, whatever the hell that is these days, and try to relax before I get on the phone and beg for my paycheck.

Summertime

2007-08-17T16:48:00.000-05:00

I am always saying that I don't spend enough time on my own blog but I keep letting it happen. I have been pretty faithfully blogging my pulmonary rehab progress since the beginning of this year over at Breathing Better, Living Well. Rehab has been a huge help to my psyche and my breathing, especially after a recent hospitalization for pneumonia. I thought I would wind up backsliding but ever so slowly, I'm making gains again.

I just got through a training class in July and it's almost time for another class. The last class of students was exhausting. They collectively had the attention span of gnat and were constantly complaining about how we taught them and what we gave them to do, and always seemed to be in the middle of some sort of drama in their personal lives. Thank goodness that's over and now I'm looking forward to a new group at the beginning of the month. I know I'll screen them much better to make sure that they are ready to take on the task of learning. It's always so much fun when students are motivated and really want to learn.

I'm also working on a project to bring free home visits to COPDers. This is exciting work for me and a project that is near and dear to my heart. It's a program to help prevent recurrent hospitalization to a population that could benefit from education and support. It's a nurse-based service but I hope to get referrals from docs who want better outcomes for their patients, and a local hospital that wants to save some money on ER visits and frequent recurrent hospitalizations.

Who knew when I left full time work that I would find so many ways to fill my time that brought me so much happiness! Who needs a summer vacation when you can do what you love and still have time to smell the roses!

The Birthday Girl

2007-07-18T15:26:00.001-05:00

So the fruit of my loins didn't like the picture of her that I posted. This one was taken on her birthday and I hope she likes it better! Again, Happy Birthday, Sweetie!

Happy Birthday

2007-07-16T15:43:00.000-05:00

Happy Birthday to my bouncing baby girl, 7lbs,11oz, 21 1/2 inches long, born on Monday, at 6:20AM, July 16, 1979.

The birthday happiness is truly mine, for the love and the joy she has brought to my life. Happy Birthday, Megan! I love you.

Pt Cruising

2007-07-01T11:19:00.000-05:00

I love my PT Cruiser. I wasn't even looking for a new car when I discovered it in 2004. I was pretty happy with the car I had and was just surfing the web one day and liked the look of it. I thought, well not everyone has one, and all cars were looking generic to me. So I went to a dealer and drove one. I was hooked.

It's easy to get in and out of without scrunching my lungs into my bladder and it's a comfortable ride. I love to drive and some days when there is little else I can do because of how I feel, I get into my car and drive and all is right with the world.

I have never cared much what I drove, and have owned many heaps in my day. I especially was fond of the buick I owned that the driver's side door would fly open when I made right turns...but I digress. So I bought my very first ever brand new, 7 miles on the odometer, sparkling newly painted, no dent new car. Ah, and did I mention the 6-CD player? I can listen to all my favorites while I PT Cruise around the 3 state area where I live.

My car is now 3 years old, and has many miles on it, and I'm still loving my "new" car!

Rainy days

2007-05-20T12:06:00.000-05:00

The past few days have been raining and it really messes with my breathing. I didn't even go to a family wedding that I had been looking forward to. I get so much more short of breath and doing anything, even walking, feels like it takes all of my effort and energy.

Needless to say, the couch potato in me shines during times like this. I watch everything from cable news to Animal Planet, Cops, Emeril Live, Hollywood gossip to Nancy Grace. What on earth is all the attraction to Paris Hilton? It seems like everyone is hanging on every move she makes. Well, even I want her to go to jail now. What's up with all the guys and the scruffy look? I really love a guy with a little 5 o'clock shadow, but a 5 day growth in a tux? When did I miss that fashion news flash? And why should I care about Britney Spears? Oh yeah, she's another "poor little rich girl" who's lost her way. Duh.

I haven't been out to do any shopping so I've used up everything in my pantry and fridge to feed myself. I discovered that cereal is a great dinner meal, red kidney beans are quite good from the can, hard boiled eggs are a great snack food and I single handedly brought back tuna noodle casserole.

Now I have to go out today to get some cat litter!

Snitching

2007-05-06T13:22:00.000-05:00

I admit it. I snitched. I live in a 6 family house and the family directly upstairs from me got a visit from the PD at 3:30 in the morning a couple of weeks ago. The 19 year old son called me a 'snitch' a couple of days later.

The family upstairs consists of a single mom, her 10 year old daughter, 19 year old son and his wife. I was jolted awake at 3am one morning by yelling. At first I thought it was out on the street, but soon realized it was coming from directly above my bedroom.

The yelling continued and it was so loud that I couldn't go back to sleep so I went into my livingroom and sat on the couch. This went on for another half hour, and then I heard footsteps running above me and a loud thump, all the while the incessant shouting continued. By now I was afraid that someone was being hurt - the thump was loud. I would never be able to live with myself if the young wife or anyone else was hurt and I did nothing about it. I could hear every word that the man was shouting and he wasn't stopping.

I did what I felt I had to do and I called the police. I am pretty tolerant and wouldn't have done anything if it was just the yelling - it was the running and thumping that concerned me. The police came and knocked on their door loudly for over 10 minutes. Of course all noise stopped when they arrived. When no one responded to the knocks on their front and back doors, the PD started to batter their door in. THAT got their attention. The mother came to the door and told the cops that they couldn't come in without a search warrant and the cops responded that they could. She resisted - they bashed the door in to check on the welfare of the family.

Thank goodness no one was hurt and I am NOT sorry that I called the PD. I really resent that this neighbor considers that snitching. If anyone ever hears any loud shouting or banging in my apartment, I would appreciate someone checking it out.

I live in a small town and this whole 'don't snitch' crap is lost on me. I get that there is a whole population of people who have a basic mistrust of any authority but let's face it: the whole 'don't snitch' campaign was started for, and applies to thugs.

I refuse to be intimidated and will do what my gut tells me. I don't think I was too far off, either, because he has since smacked his little sister, and gone after his mother with a knife. Too bad I wasn't involved in any of those incidents because no one else will step up when they see this or hear it.

Tug of war

2007-04-20T19:26:00.000-05:00

A tug of war should never involve a child. When I heard on the news about Alec Baldwin's tirade against his daughter over the phone, it just made my heart hurt. I've been there. I wouldn't do it. It cost me several years of being without my precious daughter. Shame on Alec Baldwin for subjecting his daughter to his frustration and shame on Kim Basinger for making the message public and getting a bodyguard for her daughter to further inflame the situation. Here is the rant he left on his daughter's answering machine:

Hey, I want to tell you something, OK? And I want to leave a message for you right now. 'Cause again, it's 10:30 here in New York on a Wednesday, and once again I've made an ass of myself trying to get to a phone to call you at a specific time. When the time comes for me to make the phone call, I stop whatever I'm doing and I go and I make that phone call. At 11 o'clock in the morning in New York and if you don't pick up the phone at 10 o'clock at night. And you don't even have the G**damn phone turned on. I want you to know something, OK?
I'm tired of playing this game with you. I'm leaving this message with you to tell you you have insulted me for the last time. You have insulted me. You don't have the brains or the decency as a human being. I don't give a damn that you're 12 years old, or 11 years old, or that you're a child, or that your mother is a thoughtless pain in the ass who doesn't care about what you do as far as I'm concerned. You have humiliated me for the last time with this phone.
And when I come out there next week, I'm going to fly out there for the day just to straighten you out on this issue. I'm going to let you know just how disappointed in you I am and how angry I am with you that you've done this to me again. You've made me feel like s**t and you've made me feel like a fool over and over and over again. And this crap you pull on me with this G**damn phone situation that you would never dream of doing to your mother and you do it to me constantly and over and over again. I am going to get on a plane and I am going to come out there for the day and I am going to straighten your ass out when I see you. Do you understand me? I'm going to really make sure you get it. Then I'm going to get on a plane and I'm going to turn around and come home. So you'd better be ready Friday the 20th to meet with me. So I'm going to let you know just how I feel about what a rude little pig you really are. You are a rude, thoughtless little pig, OK?

I don't usually talk about this because although it was many years ago, it still can bring pain and tears. When my daughter was small, her dad and I divorced. The divorce was quite amicable and we shared joint custody of our daughter. This ended when our daughter was ready to enter first grade. I felt she should go to school where I lived; he felt she should go to school where he lived. After a year of court battles, my daughter was showing signs of severe stress, and I said that I would settle for joint custody with her father having physical custody if he would get her into counseling right away.

When it came to my daughter, from the start my ex made it hard for me to communicate with her or to see her. Our first Christmas apart, he threatened that I wouldn't see her unless I signed over total custody to him. True to his word, when I showed up at his door on Christmas morning with presents, they weren't home. I had gotten a court order specifically to see her this Christmas because of his threats, but he defied it. I left the presents at the door and left, and I found out later that he told her that 'mommy didn't even want to see you and didn't even get you a present'.

He would unplug the phone so that when I was scheduled to call her, the phone would just ring and ring in my ear. He told her that I didn't try to call. This went on for several years. I endured thwarted visits, calls that were never connected and a barrage of hateful things said about me.

At one point, when I questioned why she was never home when I called, he offered a specific time for me to call. It was Sundays at 6 pm. Dutifully I would call; I would panic if I was a minute late because he would unplug the phone if I was late. I got to talk to her but only for a moment because she would be called for dinner almost immediately. Eventually she started calling me names and I was bewildered. She told me later that her step mother told her to call me these names.

There was much more, but this should be enough to explain my frustration. So I understand the place Alec Baldwin spoke from. But I would never, never bad mouth her dad or step mother or condemn her for speaking trash to me.

I'm no hero. I coped the best I could. For the 5 years that my daughter lived with her dad I was in agony. Probate court sided with him. It was the 80's and fathers' rights were being pushed. I was a professional nurse with a spotless record but the court said I put work ahead of my daughter. WTF??? was a question I often asked myself. I finally consoled myself by immersing myself in drugs. This was another hell that lasted several years. I even left nursing until I could finally pull myself together.

My salvation was a counselor who told me that I should give my daughter my phone number and tell her to call me collect whenever she wanted, day or night. This way it would be her choice to contact me if she wanted and not under any scrutiny from her dad and step mother. She told me that it may take a while, but that my daughter would begin to question whether what she had been told about me was true. And to my surprise, she called. Infrequently at first, but more and more, and eventually we spent a day, then a weekend together. Then she wanted to live with me again. I wasn't the monster that her dad had portrayed and he pays the price of a poor relationship with her today.

I have never, ever regretted not bad mouthing her dad, or making her a pawn in a sick battle. I have had to bite my tongue and deal with enormous pain, but in the end, the relationship I have with my daughter today is so worth it!

All I have to say now is thank the Lord for mental health workers, social workers and nurses who counsel those of us in so much agony and pain, so that we can survive the unimaginable.

Unimaginable

2007-04-17T14:01:00.001-05:00

I am having just the worst time wrapping my mind around the devastation at Virginia Tech. So much carnage and so many suffering families that it's mind blowing. I turned the TV on yesterday and my mind was assaulted with the images and realities of how life can change in a heartbeat. I called my daughter just to hear her voice. I cannot imagine what all of the parents and families of the dead students and faculty must be going through. But it must be a nightmare of unimaginable proportion. There but for the grace of God...

We seem to realize, after the fact, that something was not right with someone who would do this. How do you make a conscious decision to kill 32 people? The signs are there. Half hearted attempts are made to help the person. But not enough was done. That seems to be the case with the man who is responsible for this carnage.

I wish for everyone involved peace and some solace from this unimaginable pain they must be feeling. For the rest of us, I wish that we finally learn something from this and prevent it from happening yet again.

Back to business

2007-04-09T21:48:00.000-05:00

I've been lax about posting in my own blog lately and I've been missing it. I have spent the past couple of months posting in the rehab blog about my pulmonary rehab experience. It's been slow going for me but I'm managing to move forward.

I miss not writing about things that are on my mind and things that I'm doing and thinking and feeling. So I am going to be here more often.

This month we had a new class start and that's been fun. This particular group is so vocal and ask so many questions that the time flies by. I am so proud of the (mostly) women who find us and are starting a new life for themselves. For some of them, this is the first time that they have done something good for themselves ever. Some come from abusive homes and are striking out on their own after terrible experiences. Some find us after they have raised their kids and want to do something worthwhile with the rest of their lives. All of them inspire me because they are so brave and bring so much determination to the table. It makes me feel so good that we can offer grants and scholarships to many of them that could never have been able to do this without some form of help.

Our program is up for re-certification by the Department of Public Health and I've been working on that for a couple of weeks. I thought I left behind the paperwork that governmental bodies impose when I left full time nursing but lo and behold, they're everywhere! But this could never be as bad as a JCAHO accreditation or a nursing home survey and I do it gladly, knowing that. I've been through them both and they were painful!

The foundation that I work for and I have been talking about a program that we'd like to start that involves free home visits for patients with CHF and COPD to help reduce ER visits and hospitalizations. I've had meetings with the staff of a program that has been active for about 5 years in another community. It's exciting to start something from the ground up and of course, it's definitely an area that is close to my heart (and lungs)!

Thoughts

2007-03-07T00:10:00.000-05:00

I spend many hours alone thinking about death. I know it's inevitable, unpredictable and certain. I accept that. It may be sooner for me because of the COPD, and most likely will be. But I could also be hit by a truck tomorrow. You just don't know. But I think about it while I breathe in my oxygen and pant after everything I do.

Some days I wish it would be soon because I am so tired of fighting to breathe and so frustrated with wanting to do so much and not having the energy and the air to do it. At those times I mostly worry about how I will die. Will it be gasping for air, in pain or extreme anxiety or will someone know to make sure I get good meds. I'm in the process of making a living will but I worry that my wishes won't be carried out. I know how hard it is for families of dying patients to let go. Most days I just carry on, trying to make it better. There's good in every day, I just have to look for it.

One of the best parts of nursing was working with dying patients and their families. I felt honored and humbled to be allowed to share their most important life event. I always felt that I got more in return than I ever gave. What a gift it was to care for them.

I started nursing on an oncology/hematology unit in the 70's. Cancers were much less curable than they are now. It wasn't uncommon to see a woman in her 50's dying of lung cancer that had metastasized to her bones and brain. Leukemia killed most of the young people who came in to our unit with it. 18 year old boys were dying of testicular cancer.

It was during that time that I attended my first Kubler-Ross seminar. She awed me and I was hooked for life. I saw her two more times and met her personally. Her work inspired me. I was left with a life long desire to make a difference for dying patients. In the 80's I attended an international seminar on death and dying in Montreal and met many of the pioneers of that era. I spent years learning all that I could about death and dying and how to control symptoms and how to connect with dying patients and their families. I learned how to be quiet and really listen to what was being said. I just cannot express how much of a gift it has been.

So now that I contemplate my own death, it's not so scary for me - really just the nuts and bolts of it. We've learned so much in the last 40 years, but damn, there are still hold-outs who can't even say the word death and cannot fathom pain and symptom management. Hell, I think I've worked with most of them, and I hope that I've educated a few of them.

For now, I just feel good to be alive. I work hard to accept the limitations I have had imposed on my life and to be grateful that I am so much better than some others.

But I still think about death.

Happy Valentine's Day

2007-02-14T15:53:00.000-05:00

I've been posting my rehab progress over on Kasey's Rehab Blog which is on my sidebar. It's been a good experience for me and while I'm doing the baby steps, it's showing in my endurance and ability to do more.

I plan to be here more posting so I hope everyone hasn't given up on me!

January in a nutshell

2007-02-01T20:30:00.000-05:00

I cannot believe that it's Feb 1st! I was so busy in January that I hardly noticed it go by...I am back at pulmonary rehab and working hard to increase my strength and endurance. I'm working out on 4 machines and in less than a month I am feeling so much better. Normal people take breathing for granted, but COPDers have to plan for everything from the amount of oxygen we have to take with us to where we park so it's not too long a walk to how much stuff we have to carry. Not to mention the prep time involved before going somewhere ~ I don't leave the house without my paint and spackle on! And how can you go out without a shower? This all takes time, energy and oxygen. BUT by working at building up my muscles, I will make them more efficient so that I need less of my meager supply of oxygen for them so that it can go to the organs that need it the most like the heart and brain. Heaven knows I need that supply to the brain! Better endurance means I can walk farther, carry more and do more. I'm all for that!

Work was terrific in January. We had a great class of students who were so excited about the journey they were embarking on. It makes my job so much easier when students participate and ask questions and want to be there to learn. I think we've really hit our stride with the program and our foundation's goal of sending good qualified caregivers into the community is being met.

This time I didn't teach nutrition, thank goodness. I spent more time on communication and care of the dying and respiratory care. These are my passions. Life was very good in January!

BALANCE

2007-01-22T17:23:00.000-05:00

I didn't dare write a post last week - it just would have been gloom and doom and not pretty. My mind kept going into the nooks and crannies of darkness and despair. I'm not exaggerating either. I had this feeling of impending doom all week in the pit of my stomach that wouldn't go away. I felt sick in the beginning of the week but gradually felt better physically, however, I couldn't produce a decent thought that was outside of myself and my own misery to save my life. I would go between anger and depression and back again to just plain down and out and wallow in there.

By the time that I realized that I hadn't refilled my celexa, I had been without it for about a week. I had been thinking that maybe it was time to start weaning off it because I was doing so well, but now I think I better not try that just yet.

I started on it several years ago for depression that was affecting my life. I was having a very hard time dealing with a full time stressful job and a chronic illness that just overwhelmed me. I couldn't sleep and that compounded everything. Celexa helped bring me back into harmony with my life. The relief brought with it an ability to deal with my life and find the goodness in it without dwelling in the negative too long. I still get depressions but I can work my way out and frankly I thought it was more me than the antidepressant. But this recent episode seems to indicate that I still need the med. And maybe learn some more coping skills.

Hey Michael Jordan

2007-01-12T19:33:00.000-05:00

I am writing today about Penny over at "I've got a few things to say"(link on my sidebar). Penny is an educated, single mom whose kids are grown and is a hard working and hard playing gal. She is looking for Mr Right. She is tired of dealing with all of the Mr Right Nows.

Penny's posts are usually very witty and deal with life's ups and downs. She has planned her whole wedding with the help of her blogging buddies and you have to check it out - it is seriously funny! She did it all without the hint of a groom present.

Now that Michael Jordan is single again, Penny's friends think that she and Michael would make a great couple. The rest of us are pitching in and putting forth the word that she is available in the hope that a google search will eventually lead him right to her!

You GO girl. Who said there's no romance left in the world....

Resolutions

2007-01-10T20:49:00.000-05:00

I don't know if I can adequately describe how I'm feeling. I didn't make any New Year's resolutions, but I seem to be moving forward. We have a new class, and I love teaching them. I love the idea that in some small way, I am helping my community by placing good caregivers out there. It gives me purpose and meaning and I need that. As I've said before, I thought that I had lost that when I quit full time work in 05. What a gift to be given, helping to make a difference somewhere. My passion has always been my work, and I have that again.

I've also started back in pulmonary rehab, working out and helping my body help itself. My lungs may not work so well, but by exercising, I can make my muscles more efficient so that my lungs send more oxygen to my vital organs. Overall, it feels freaking good. Just the baby steps I've taken this year make me feel more alive and useful and a participant in my own life, not just a victim of lung disease. I think I've finally conquered the denial of COPD, constantly trying to pretend I'm ok when I'm not; past the embarrassment of being a healthcare professional who should have known better. I have this and I'm living to the best of my ability with it and now I'm trying to embrace it and move forward and do more despite the limitations of it.

So that's where I am today, just grateful. Stay tuned for my evil twin who always wants the whine with her cheese.

BACK IN THE SADDLE

2007-01-05T21:36:00.000-05:00

We're rockin' and rollin' again. I'm back to work this week and I'm exhausted. It's a totally good tired, too. As much as I love to hang around and do nothing but watch TV and movies and eat, I need the real world to keep me going. I need purpose and commitment and people to feel a real sense of well-being.

While I was deep in my journey of self indulgence, I discovered online TV shows. I thought they'd be better than TV because there would be fewer commercials, but alas they also have their share. But it was quite cool to be watching Heroes on my computer. Now I wish I had a laptop! It'd be nice to be all comfy in bed and watch my favorite shows!

I start pulmonary rehab again next week. I am deconditioned and need to work back up so that I don't get so short of breath with every movement. There are other people there with the same problems and we work out on treadmills, bikes, upper body machines and this wonderful invention the Nu-step machine. On the Nu-step, you sit and move your arms like you're cross country skiing and move your legs up and down. It's awesome exercise and the key here is you sit!! I love that machine! I'll be going to rehab twice a week for probably forever. I just can't look at it as forever because then it gets overwhelming for me. But it's something that I have to do to keep myself breathing better.

So the new year is off to a good start. The only dark spot is when I see my pulmonologist next week. I have to find some way to explain the 30 pounds that I gained since I saw him 6 months ago! I don't think he's going to buy my prednisone theory, although it sounds pretty rational to me! I guess I'll have to endure the "look" that always makes me squirm because I've done something wrong...

Re-defining Normal

2006-12-29T21:43:00.000-05:00

"Every morning I wake up and must re-define normal". That's what Augustine (Augie) Nieto said. He was diagnosed last March, at 48, with ALS (Lou Gerig's Disease), a degenerative neuromuscular disease for which there is no cure. Most people die within 5 years of diagnosis as their respiratory muscles fail to allow breathing.

To me, Augie Nieto is a hero who fights everyday to maintain what he has, and works tirelessly to bring awareness and money to help find a cure. He is a fitness guru and consultant and doesn't dwell on what he's lost to the disease. He can no longer use his arms and his speech is slurred, but he puts himself out there everyday to improve the lives of those to come from the devastation of ALS.

Earlier today, I was going to write about how I am learning to re-define normal for myself, but I am very humbled by this man and all the other courageous people who live with life threatening and debilitating disorders. I would just prefer to say my hat is off and my heart is full by the heroes who continue to work to help others in the face of their new normals.

bits and pieces

2006-12-19T23:18:00.000-05:00

*I just have bits and pieces to say today. I'm very content with Christmas coming and being with my family. And sharing a bit of Bailey's Irish Cream with them...ho ho ho!

*I've loved looking out my windows at the neighborhood for the past couple of weeks because everyone's had their Christmas lites up and shining every night. For some reason, they are all off early tonight and I know I am going to miss them after they're down.

*I just watched the last episode of the Everest expedition on Discovery. I still don't understand the need to push oneself to the point of losing fingers and toes to frostbite or even dying in an effort to reach the summit of ANY mountain. It's very sad about the men missing in Oregon on Mt Hood, too. I'm wondering what it takes to be that single minded about something. I will never know because I have trouble breathing at sea level, never mind at 29,000 feet above it!

Today

2006-12-15T23:40:00.000-05:00

It's hard to believe that I haven't posted since last month. For the past several weeks I've felt achy (pulled a muscle in my back) and cranky and down in the dumps. This always seems to happen during the holidays, and I know that it's fairly common, but it still feels like an out of body experience.

Most of the time I try really hard to keep a positive attitude, look on the bright side and appreciate what I have, rather than what I don't have. I have to say that this breathing thing is putting me in a foul mood. I start to do something, and have to stop to catch my breath even wearing the oxygen. Whatever I do, it takes twice as long to recover from doing it. This really disheartens me after a while. I am tired of fighting for each breath and pretending that I am happy to just be alive. It sucks to exhaust yourself just doing basic daily things. I have to force myself to get beyond that to do anything like shopping, cleaning, cooking or even going to visit someone to the point that I try to avoid doing them at all.

Okay, that's out of my system. Moving on, I've got another class starting after the first of the year. They're really going smoothly now and I find that I just love teaching and sharing my nursing and life knowledge with others. We've just gone through the interviewing process for the next class and what I love about that is that we can find funding for some very underprivileged and worthy people. We have a couple of students who are living in shelters right now and I think it's awesome that we can provide an opportunity for them to change the course of their lives for the better. When I start feeling sorry for myself all I have to do is look around me and find ways to help others and *poof* goes the pity party and it is replaced by a renewed purpose to life.

So my life is a continuum of dichotomies. Good and bad. Up and down. Wise and dumb. Back and forth. Happy and depressed. Sometimes in the same day, sometimes not for months. Today I am grateful that I'm alive and feeling anything.

Never lie to your doctor

2006-11-21T20:06:00.000-05:00

I've learned a few things over the past few years from dealing with my COPD. One is if you go to a doctor for help, take his advice; you are partners in your care. The other is not to lie to him.

I tried fairly successfuly for several years hiding symptoms and telling everyone that I was "okay". I was pretty good at walking for a little bit and then stopping, pretending I was looking at something so that you wouldn't know it was because I just couldn't breathe. At work and with my family I would hide that it was so hard to do even the simplest things. I was always tired and getting through a day was tough to do.

I took on more and more responsibility at work but was exhausted by noon. I dragged all the time but didn't want anyone to know. Denial? Yes. Need for control? Yes. I just didn't want to be a "lunger". That's what we called them years ago, maybe still do.

I would go to my PCP and get the scripts I needed to help me breathe, but I always told him that they helped and I was doing fine. I didn't tell him about the fatigue and air hunger. He didn't have a clue and that was my fault.

I was also seeing a pulmonologist but it was hard to get anything past him. He sent me to pulmonary rehab a few years ago after many refusals on my part. I cancelled appointments with him constantly and avoided him because I didn't want too many doses of the truth.

Three years ago I was hospitalized with respiratory failure. I wasn't doing well and the pulmonologist wanted to intubate me. My PCP didn't think I was bad enough to be intubated but the pulmo did it anyway. I was on a vent for a week and it looked pretty grim for me for a while. I was also the dreaded nurse-patient who was horrible to deal with. Although I'm sure it was the medication, I pulled the tube out twice and as soon as I was off the vent, I wanted to go home and I was the one who complained bitterly to anyone who would listen that it was too noisy at night. But somehow I got through it and got better.

A year and a half ago, my pulmo wanted me on oxygen. I was still working and thought he was nuts and refused to "give in". But six months later I went to him in tears, no longer able to keep up the sham that was my life. I gratefully accepted the oxygen that has made my life easier. I do what he says now. He's my partner.

My PCP apologized every time I saw him for a year for not recognizing how bad I was before I went on the vent. But truly he had no idea how much I had declined because I didn't TELL him.

A friend used to have as her signature: "It may be that my life is to serve as a warning to others". I learned the hard way. Thank goodness I didn't die trying to prove how strong I was.

Happy Thanksgiving

2006-11-20T23:52:00.000-05:00

Years ago when I needed a babysitter for my daughter while I worked nights, I met Erin. Erin was a teen at the time and she and my daughter got along well and I am forever grateful to her for keeping my daughter safe during the nights I wasn't there. Single moms need trustworthy people around them and Erin was that and more.

My daughter and I moved and Erin and I kept in touch kind of hap-hazardly. We both lived in the same town but worked different schedules. My daughter grew up and got married and I hadn't seen Erin for years. I knew she had a couple of kids and was doing ok. I was pleasantly surprised to find out that Erin, her mom and her kids live in the building that I just moved into. We've re-connected and I think her kids are adorable. I comforted her 5 year old little boy last week when he was frightened by the fire alarm and until he lost his shyness enough to talk to the firefighters (it was my fault anyway that he got so scared).

I was pleasantly surprised again today when I found in my mailbox a decorated message from Erin's daughter, (who is 9 years old) to me, and it said:

I AM THANKFUL FOR YOU. HAVE A HAPPY THANKSGIVING

Well damn! It's going right on my fridge. It doesn't get much sweeter than this.

EVEREST

2006-11-18T14:30:00.000-05:00

I cannot for the life of me understand the need to climb Mt Everest. I know it comes from deep within but I have other goals and dreams that are not so grandiose in nature. This expensive dream of reaching the summit can cost around $40,000 as well.

The Discovery Channel is carrying an 8 part series about a group of people and their quest to climb Mt Everest. It seems that the documentary was mainly about Mark Inglis, a double amputee, who lost his legs in a prior attempt 20-odd years ago and now was attempting it again using his artificial legs. He is portrayed as brave and undaunting in his climb to the top. I agree that this must have taken super human determination and strength.

Earlier this year, Mark Inglis and his group were generally maligned around the world when it was discovered that they left a man to die as they filed passed him on their way to the summit. This was caught on film but won't be shown on the Discovery documentary. In my opinion, this is as important as Mark reaching the summit because this is life: many people die each year on Everest trying to master the king of mountains. And I will never understand in my lifetime the inhumanity exhibited by the expedition that would allow them to leave a man in a snow cave to die alone so that their mission could be accomplished. How very very shameful and a sad statement about priorities.

Life From My Couch

2006-11-15T18:44:00.000-05:00

I knew this would happen. Give me some time off from work and I degenerate into a remote controlling, lazy and uninspired human being. And I'm giving much more credit than earned by saying I'm a human being!

I have only been watching TV and sleeping and it's been hard to get me away from the Food Network, House, ER and Millionaire long enough to cook a meal or do the dishes. My grooming habits have degenerated to showering only when stinky or my clothes are dirty. And clean clothes means sweats and a tee shirt.

I was bored last night and threw an impromptu block party. By that, I mean I went to cook some hamburg on my stove last night and something started smoking under the burner and my smoke alarm went off. And in my apartment, I not only have smoke detectors, I have real live loud clanging detectors that sound in all 6 apartments and up and down the street and is hooked up to the fire department who came screaming over to my house to join the party. So everyone knows who I am now in my new neighborhood. I just don't think they like me too much.

I decided after that fiasco, that by tomorrow I'm getting cleaned up, get out and back to the real world. I am going to see family, and I'm going to use the Employee Sale Coupon that my brother sent me to get some of my favorite Yankee Candles. Ah the sweet smell of reality. Another reason to look forward to tomorrow.

Election 2006

2006-11-08T19:19:00.000-05:00

November 7th has come and gone and another election is over. I am not particuarly political. I'm not left or right or democrat or republican or green party or libertarian or whatever. I vote for who I think will do his or her honest best for the people who voted them into office.

I am a cynic. I despise the negative campaigning and mud slingling and name calling. I vote on the issues that I understand and believe in. I am not going to vote if I don't totally understand what is at stake and I really try to understand each issue prior to casting a vote. I believe in personal responsibility and think that there is too much government. Too much red tape and too many people in the mix for politicians to make good on their campaign promises. I don't for a minute believe a single one of them when they promise something. There are too many lobbies and special interest groups with money to sway even the most honest politician at some point.

I've always said that while I'm too old to lead a revolution, I would be in the front lines, if anyone wanted to get the ball rolling. Idealistic for sure. Unreasonable probably. But no one ever thought the Boston Tea Party would happen either.

I think something has to change before we find ourselves separated by someone who comes in from another country and starts dividing up the states to run. I for one don't want to lose a single right I have. I appreciate living in America and savor my rights. I hope we don't lose them in my lifetime. I cannot think of anything more sad.

Abe Lincoln, where are ya, dude?

Inner Chef

2006-11-05T19:54:00.000-05:00

I have about a month off now without any work. I'm not sure what I'm going to do. I do know that I tend to get depressed when I don't involve myself in something. I am SO over moving. Yes, I have boxes and boxes to unpack and things to place somewhere but that doesn't spark my interest right now. My inner chef wants to go on a cooking spree but well, that doesn't work very well if you're just cooking for one. I am very very much looking forward to my daughter coming home this month finally after 2 months away. I'm hoping she will inspire me to finish up unpacking and decorating and give me someone to cook for.

But my inner chef is getting active again. I made a chicken noodle soup from scratch today and it came out really well! I even surprised myself. I love cooking shows and try to learn the basics so that I can create my own dishes. I am known in my family for my chili but have been experimenting with Asian dishes lately. I can do a mean teryaki steak or chicken and special rices. I remember years ago watching Emeril Lagasse and learning how to season a turkey by putting seasoned butter between the skin and the meat. YUM! And while Rachael Ray is a little too perky for me, I have liked her 30 minute meals. I cannot however, fathom where she gets the hutzpah to have a daytime show offering ADVICE on things such as relationships and kids. Duh. She is recently married and has no kids. She should just stick to cooking!

Good Week, Bad Week

2006-11-03T19:30:00.000-05:00

We had a drug raid last weekend in my house (6 apts). Another reality check of where I'm living. But it's all good because they didn't bother me and I didn't know it happened until after the fact. I was worried about Halloween because for the first year I didn't have candy for the kids and thought my car would get egged or something but that was not the case. Thank-you neighborhood!!!

I totally ran out of oxygen by Monday. I didn't panic but I also didn't move around a lot. I always wondered what I would feel if that ever happened, but it was okay. When I have extreme episodes of shortness of breath, I sit very very still. In my mind I am crying and scared but outward I am calm and collected. I've learned that crying only blocks my nose and makes it harder to breathe so I work very hard when I'm scared to be calm and control it. Panic only makes the situation worse. This lesson worked well for me when I was out of the O2. My worst times are in the middle of the night when no one is awake anywhere in the world and my mind works overtime, thinking of the worst scenarios. It's hard to describe, and happens infrequently but when it does happen, and I feel breathless and helpless, I am terrified. It is just simply horrific to feel this way and be alone. I don't wish this on anyone and only wish I had quit smoking so much sooner. If nothing else, I am a role model to smokers about what will happen if they don't quit. (hmmm ~ is there a public service commercial in my future?)

All in all it was a good breathing week for me. I was up and out every day this week and that is a sweet thing. I resigned from full time work a year ago and this opportunity to smell the roses is awesome. I have enjoyed this fall so much and little things are important to me again. Money isn't everything and it's a shame that I had to get sick to appreciate that my career wasn't all that I thought it was to me. I can still make a difference in lives and enjoy life as well.

And that is what made this a good week.

ER

2006-11-02T23:16:00.000-05:00

Ok, I am officially the biggest ER freak on the planet. After 30 years of nursing in every imaginable setting, you would think that I wouldn't need to get a fake fix of medicine. But oh yeah, I do.

I have watched every episode from the beginning. I have watched every episode at least three times. Every time it's on TV I watch. Yesterday I watched
Dr Romano die ironically by a heliocopter for the third time. I am pathetic ~ I cry everytime I see Dr Green die. I sit on the edge of my seat every time someone is in danger and I have passionately loved all of the leading men.

I still miss the docs who are gone: Doug, Mark, Carter. I swear I'll quit watching if anything happens to Kovac...I've been disappointed with previous seasons, but I'm really liking this one. There's lots of activity and good characters.

I've only admitted this here, so don't tell anyone, okay?

High Price of Medicine

2006-10-29T13:13:00.000-05:00

I am sick and tired of American drug companies putting the squeeze on my limited wallet! Because of my COPD, I take many meds and inhalers. Even with insurance, the co-pays are high. But as of October first, I no longer have health care coverage. No more co-pays. So the 8 meds I take will now cost me more than $500 per month and if I couldn't afford the $400 health insurance premium under COBRA, I certainly cannot afford these outrageous prices.

Last year I was without insurance for a month and applied to the Partnership for Perscription Assistance. I had to pay them $5 per perscription to get applications to the pharmaceutical companies. Upon receipt of the applications, I noticed that many of them have their own charges. However, by that time, my insurance was re-instated and I didn't need to apply. I never received my $40 "guarranteed" fee, even after requesting it 3 times. A year ago I never would have whined about it but now I don't have a full time job, don't have health insurance and money is tight. I have to pick and choose where every penney goes.

I made the choice to buy my meds from India. I know many many people who do this and some of the meds are from the same pharmaceuticals that supply the US. The big difference is that I only paid a fraction of what I pay with a co-pay. I am estimating that I am saving at least $1,000 over 3 months! This is HUGE to me! And not only do I save money, I am able to get Symbicort, which isn't even available in the US until next summer. It has been approved overseas for quite a while now. I am very excited about starting this and yes, my doc is aware of it. Symbicort will take the place of Advair, which on some days is very hard for me to inhale.

I don't know what the answers are to the high cost of drugs in the US, but until the FDA and the big drug companies stop playing favorites and trying to see who can make the most money, I am going to keep getting my meds from India. They are good quality, they work and I can afford to still eat.

Daughters Rule!

2006-10-23T21:49:00.000-05:00

My daughter gave me the most awesome gift this past Sunday. She's been gone for a month and a half and she called me to say that her husband was dropping off a present that she gave him for me...I answered the door when he knocked and THERE WAS MY GIRL!!! I was totally shocked and totally happy and absolutely love this little girl (who is now 27) who is the only person who can make my day like that! What a wonderful surprise. Daughters really take care of their moms! Daughters Rock!!!

Welcome Home

2006-10-19T21:01:00.000-05:00

I can't believe that it's been almost 2 weeks since I've posted, read or done much of anything online! Well, I'm moved and functional and haven't gone nuts from working and moving and breathing and getting to know the neighborhood.

I love that I'm closer to town and the college that I teach at. However I have been sheltered from pesky neighbors for the past 10 years. I remember now why I loved it so much out further in the country. No one bothers you for anything out there.

In the almost 2 weeks that I've been living here, I have been commissioned to take my next door neighbor shopping tomorrow. My own fault, I have to say. Dumb dumb dumb! I saw her walking home one day carrying a ton of groceries. She and her husband don't have a car so I told her husband that I would help her out and take her grocery shopping so that she didn't have to walk home with tons of bags. The next day, she came over and said "Mickey said you like to shop. How about if we go to Walmart and Big Lots?" Umm, I hate to shop but I guess I haven't completely rid myself of the inner jerk who feels that she has to please everyone. I didn't want to make HER feel bad so I said ok and we're going tomorrow. I love to shop online, but tomorrow I will drive 25 miles to sit in the car while she shops her heart out. I am definitely having a good long talk with my inner pleaser person and she's taking a hike!

My other welcome to the neighborhood happened on Monday afternoon. I was working on lesson plans and all of a sudden I heard yelling. "Shut up you crackhead!" "I am not a crackhead you pothead!" "Go do your crack and leave me alone!" "You asshole!" And it got more intense from there. I abhor drama and I guess I'll have to get used to having it on the periphery until I can tune it out. It was a nice reminder of how I should be grateful for my little world that is free from the drama queens and crack heads.

But overall I love my little space and get insanely good feelings being here. I didn't keep anything that I couldn't remember who gave it to me. So what I do have are things with meaning and comfort and peace for me. My pound kitty loves it here too. I adopted her from a shelter a few years ago and she is like a kitten again with hardwood floors to go racing around on and views from the windows that she could only dream of before. Yeppers, we are loving it here.

Welcome to the neighborhood. Home Sweet Home.

Songs to play at my funeral

2006-10-05T17:25:00.000-05:00

I was tagged by MotherJones to list 5 songs to be sung at my funeral. Here we go:

How can I keep from singing by Enya

The Pilgrim by Kris Kristofferson

The Last Laugh by Mark Knopfler

Massachusetts by the Bee Gees

Everything Must Change by Barbra Streisand

I will not be around until probably next Tuesday ~ moving day is Saturday!

When life throws you lemons

2006-10-03T21:31:00.000-05:00

I am bone weary tonight. I have been going like the exerciser bunny for a month, dealing with the drama (or is that trauma?) of having to move on short notice, trying to find a place that I can afford, packing for the place that I can afford but don't like, keeping up with lessons and classes and teaching.

I want to scream and cry but all that does is make me short of breath so I don't. But I'm afraid that after the move is over (it's this weekend) I will crash and burn. I have been so stoic that I haven't even begun to process how my life is changing. This is surely causing me stress and I already know that stress is just plain bad for my mental health and physical health. It's usually after a stressful situation that my body gets in an uproar and I wind up with an exacerbation (an acute worsening of my COPD symptoms). That justs gets me a trip to the hospital and twice already I have been on a vent in respiratory failure.

So I have been making lists of things that are good in my life and I have plenty of good things. Gifts, really. A loving caring extended family, a profession that I love and do not have to give up completely. A healthy daughter who is 27 and an adventurer and a wonderfully gifted and giving person. You know, someone you're proud to say that's MY daughter!

Most of all, and the best gift of all is that I am alive. I can see hear feel and taste it. It may be harder these days to get things done, but the alternative sucks. So things aren't really that bad after all.

Okay, enough warm and fuzzy. Tomorrow I might have to do this again...

Into each life a little rain must fall

2006-10-01T21:27:00.000-05:00

It's amazing how a rainy day will land like an elephant on my chest. Ugh. I am fine if I'm still but the minute I move around, I have to crank up the oxygen and try to go slow. Slow is not something that comes naturally to me. I've received comments all of my adult life about how fast I walk, how fast I accomplish things. That all changed over the past year.

In order to complete any task I have to move at a snail's pace. Un-natural and frustrating in so many ways. It also means that I need help to do some things, like move furniture or lift things. The oxygen it takes to move my arms over my head is amazing. I know that I won't regain any lung function, but I also know that if I improve my muscle function, they can use oxygen more efficiently so that my oxygen can go to the vital functions of keeping me alive. Important task.

However, in the past few months, I've begun working again part time and struggling with the task of finding a new place to live and other life issues, and consequently have let exercise go by the wayside. I have attended Pulmonary Rehab in the past and really need to get back to get into shape again. I have gained weight and know that contributes to my shortness of breath.

My short term plan is to go back to Pulm Rehab after I'm settled at a new place (I'm moving next week) and begin to get back some function so that I am not living such a sedentary life. Before pulm rehab the last time, even something so simple as showering was pure torture. I'd be gasping for air by the time I was done. Through rehab and support groups and internet searching, I have found many ways to lessen the torture. But I was functioning so much better and feeling better while I was doing the required exercises. Even mentally, I was so much better by exercising. The more I did, the more I wanted to do.

I'm looking forward to getting back to that feeling of well-being despite the limitations. Instead of this feeling of helplessness in the face of the limitations. Then the rain might feel less like tears.

A Helping Hand

2006-10-01T18:47:00.000-05:00

Last week we sent one of our students out by ambulance with a cardiac event. We accepted her into our CNA/HHA program knowing that she had come from an abusive relationship, she was without her job of 18 years due to a facility closing, and she was practically broke.

We didn't know that her cardiac issues were not stable. And we didn't know that she still lived in her ex-husband's house and that he still abused her. We didn't know how really broke she was until someone told us that she paid her ex her entire unemployment check every week for rent.

What we did know was that this woman was trying to rise above her challenges and be a caretaker to others. And because she found within herself a spirit of giving and caring and a need to nurture, we found a way to have her program paid for by a grant.

So out she went during class last week, feeling dizzy and nauseous and with a BP through the roof. I watched the class come together as a team to make her feel cared for. And once information was shared, they began making plans to make sure she has friends to get through this and to help her catch up with the class. They also made plans to make sure that she has food to eat, rides to places and friends to watch out for her. What a class. What class.

People in the helping professions ROCK!

Life

2006-09-30T10:30:00.000-05:00

"Learn to get in touch with silence within yourself, And know that everything in this life has purpose. There are no mistakes, No coincidences, All events are blessings given to us to learn from."

Dr. Elizabeth Kubler-Ross

Critiqued

2006-09-28T13:32:00.000-05:00

My blog has been critiqued by Billy Mac! This is what he said: http://critiquemyblog.blogspot.com/2006/09/live-love-laugh.html
It's progress not perfection... Thanks Billy!

Fat Frayed and Frazzled

2006-09-27T20:08:00.000-05:00

Today I am so tired and discombobulated. I am tired of packing boxes, tired of working on lesson plans and tired of wrapping myself in knots over things that are just out of my control right now.

I don't know why I do that; I don't WANT to do that. It just happens. Anything that could go wrong did go wrong today. I froze up my portable oxygen tank and had to take a shower gasping for breath. I stumbled over boxes all day, hurting my toe and my shins multiple times. My teaching partner called in the morning to tell me she wouldn't be with me this evening at class but someone else would. I worked on the wrong lesson plan for 5 hours today because she forgot to tell me that that someone else was teaching something else tonight.

The list just goes on and on. But now I am going to take a very DEEP breath in through my nose and very softly and slowly breathe it out through my pursed lips....and again...and once more for good measure. Now that works pretty well. I wish it was so easy to lose weight! I'd love to breath in all the food I crave and breathe out the trans fat. I can tell I'll need some Enya to fall asleep tonight.

New Path

2006-09-26T18:44:00.001-05:00

For a long time after I had to resign from full time work as an RN due to COPD, I thought I would just wither and die. I always wanted to be a nurse and it sort of defined me as a person and what I felt about life. Give back. I could have been a poster for nursing recruitment. I loved it. I feel it was a gift to be in someone's life in their lowest moments. I could feel good about myself if I could make a difference in someone's life. As hokey as it sounds, I enjoyed helping people.

I was blessed with an opportunity to continue to nurse in a different environment. I now am the program director and teach certified nursing assistants. I think I've mentioned before that I have been the RN signature of a CNA program for about 3 years. I never took money for that but had oversight of the program taught by a non profit foundation at our local community college.

Last October I resigned my job as Director of Nursing and like I said, I felt devastated that I couldn't manage the stress of the position as my symptoms of COPD became worse. This year, I was offered the opportunity to be more involved in the class and to help teach it. Oh my goodness, I had never thought of teaching, ever! But as I wrapped my head around it and the posssiblilities, I came to love the idea. The foundation and I had the same philosophy: to bring qualified care givers into the already stretched health care field.

A new class started on Monday. I looked at the class and was impressed by the faces of people who wanted to make a change in people's lives. What a unique opportunity to share my ideas and instill in them a pride in their work and a sense of self esteem because they are making a difference.

I had reached a point in my own career where I felt pretty jaded and cynical and helpless to effect changes. It took months and months away from work to recover my love of nursing and to be positive again. I remember now why I went into nursing and my love of helping and how by making small changes, each person can make healthcare better for everyone. We each have a roll to play in the grand scheme of things and I feel that now I am here to show others my enthusiasm and love of caring for others. It's still cool and it's still relevent and it's ok to love helping others. I hope that these students go out and challenge the status quo. I hope that they remind others who are cynical about why they went into a helping profession. I hope they make a difference.

I still have so much to give and who could ask for anything more?

The Plan?

2006-09-25T22:43:00.000-05:00

I'm surrounded by boxes because I'm moving in 2 weeks and surrounded by papers and books because I have a new CNA class that started tonight and I'm feeling just a bit overwhelmed right now. I can only go so fast and that's really pretty slow these days and nothing seems to be coming together like the PLAN.

Okay, I never had a PLAN, but I wish I did. I guess I just thought that everything would fall into place and I'd find the energy somewhere. Alas, that energy is hiding somewhere under a box, I think. An empty box. This is hard stuff. Just going through things to decide if I want them to move with me is so time consuming and thought provoking. I have so many memories here that it's hard to just cast off some just because I won't have room for them in the place I am going.

I'm still so angry that this has been forced upon me by a landlord who wants to live here for 3 or 4 nights a week. He actually had the nerve to call me last week to say that I might be able to stay if he can work something out but it wasn't certain...arrrrgh. I have already totally disrupted my life and plans to comply with his plans and I wouldn't stay now if I could stay rent-free! I would love to slap, slap, slap him up side the head.

But, on the other hand, I need a smaller place because I can't take care of a large place as well any more. I have to make my energy last all day and portion it out a little at a time. That has been very frustrating for me. I've always been so active and full steam ahead on everything in my life. To slow it down has been a challenge. To ask for help *gasp* has been almost impossible. But I'm learning. And it has even been a pleasure to stop and smell the roses for a while. That was a lesson learned way too late. I would strongly suggest that everyone take me-time everyday and remind yourself that you, too, are worthy of comfort and support. Take care of your bodies as well as your spirit.

Yeah, that's my plan...

Grief

2006-09-16T14:42:00.000-05:00

How on earth do you grieve for an online friend who has died? My friend Melisa passed away at 1:25 am with her family at her bedside. I cannot believe she won't be in my life anymore. I can't say goodbye to her. I don't know where to put my anger and grief right now. I know that I should know what to do but I can't think.

Melisa was just 42 and had COPD which was very severe. As bad as her illness was, she continued to volunteer for her son's boy scout troup, her religious group and she was so cheerful and encouraging to everyone. With her oxygen she could still do laundry and vacuuming and shopping. Melisa still did her gardening and loved to watch the hummingbirds that came to her bird feeders. What an inspiration she was as she waited for the medical team to tell her she was "bad enough" for a lung transplant. How ironic that she died waiting to be bad enough.

I hate this disease. I hate what it does to people. I hate that because we smoked and "did this to ourselves" it is so hard to get research money to come up with a cure. I hate being called a "burden on society". I hate that it took a good friend from me and left me with this helpless feeling.

Melisa was a good friend to me and I'll miss talking with her on Yahoo and on our cells and I will definitely miss her emails first thing in the morning. Already our Breathing Better site feels hollow without her. Like a school emptied out in summer.

I know you can breathe well now, Melisa, Godspeed.

My Friend

2006-09-15T01:59:00.000-05:00

I didn't know you could get so attached to someone you met online. I was surprised to find out how much I cared. I should have known because I even care about characters in books. But I was still surprised.

I met Melisa on a COPD board. She was so friendly and upbeat and we hit it off right away. We kept saying that we could have been sisters because we like so many of the same things and we both have this cynical, kind of dry sense of humor.

I had resigned from full time work and was spending a lot of time at home a year ago. Melisa and I would meet up on Yahoo chat and spend time sharing stories and talking about our lives. Melisa is 42 and her FEV1 is about 12%. She has a husband and an 11 year old son. I thought life was unfair to me at 55, but at 42, well that's just cruel.

We found out that we had the same cell phone plan so we started calling each other. How cool, I'm in MA and she's in TX and we can talk free. (I'm just getting up to speed with technology.)

Last night her husband called me to say that she became very ill during the night and is in the hospital. He cried as he said they just weren't sure she would make it this time.

I have been feeling so sad and lonely since that call. I can't get anything done. The bad part of an online friendship is that you're not family, and you are not near, and there is nothing you can do to even comfort the family. I feel very fortunate that he even called me to tell me. I don't know when I'll get another update on her.

My daughter and I were talking today and I was telling her about Melisa. I guess I never mentioned Melisa to her before. I don't know why I didn't. She was quick to ask if I was okay. Apparently she has had an online friend for about 5 years. They have never met and she told me that she is closer to her online friend than some of the friends she sees every day, so she understood what I was feeling.

I have a new perspective on friendship now and it includes loving online friends even if it is hard sometimes to deal with the realities of not being closer, not meeting face to face and not being able to be there if they really need you.

I am praying for life for Melisa so that she can have more time with her young family. Amen.

All Hail Helios

2006-09-13T12:19:00.000-05:00

I have been the RN signature of a CNA program for several years and didn't really have much to do with it except to review the curriculum and make sure it was in compliance with state regulations. I didn't even take the pay they offered. I was busy with my full time job of Director of Nursing in a long term care facility.

However, COPD was kicking my butt as well as the stress of my work. I was getting more and more short of breath and it was harder to stay well. My pulmonologist wanted me on oxygen long before I agreed to it. In my mind, having to use oxygen was akin to saying that I wasn't a good nurse. That I was less of a person because of a disability and I would become one of the "lungers" I had taken care of so many times. I cried and cried when I finally realized that I would need the O2 to make my life better. I conceeded and began using it a year ago.

At the same time, I resigned as Director of Nursing and felt devastated. I had been making a very comfortable salary and had great health benefits, loved my job and the people I worked with. But I couldn't keep up with the demands of the job and take care of myself at the same time, so I left. Working and not taking care of myself was the reason I was in this predicament. I was so depressed as I thought I would never be a nurse again and there was nothing else that I wanted to do. How would I support myself? Would I be on disability? Would I still be able to keep my home? How would I pay my bills?

What I've come to learn is that the oxygen has given me a new life. One that I couldn't have had without it. Yes I'm on disability, my FEV1 was 29% when I quit work. But now I can breathe easier and that allows me to move better and more often.

I went to pulmonary rehab, which showed me that there were still things I could do, maybe just a little slower. I used my oxygen and cranked it up as I worked the treadmill, the upper body machine and the nu-step. I did exercises at home with weights. I learned how to breathe in through my nose and out longer through my lips. I learned how to really breathe with my diaphram. I learned that while I would never regain lung function lost, I could make my muscles use oxygen more efficiently through exercise and save more oxygen for my vital organs.

As I became more used to wearing the O2, it didn't bother me so much to be seen with it on. I love teaching people about it. In a grocery store, a child asked his mom in front of me why I had that hose. She said "Why don't you ask her?" It was my pleasure to respond that I needed more air and the tank supplied it. I can go anywhere with it because it's so portable. I can wear it as a back pack, on the waist or over my shoulder. I have a short canula for trips out, and a long canula at home so I don't yank the tank onto the floor from the counter when I'm working in the kitchen. I am never hooked up to the large filling canister or a concentrator unit. I am free as a bird!

So fast forward to the CNA program ~ I am alive and well and able to work effectively as a nurse and be an advocate of pulmonary rehab and oxygen therapy! Who'd have thought that a "lunger" could educate the medical community and feel so good about it! I am not only responsible for the content of the program, I also teach several modules. I never thought that I'd like teaching, but I do. I have also been offered a position with an MD to do home visits to his patients, and I may also do this. All of my doubts about working with oxygen are fading in the distance.

Life is good again and all hail helios! I have a life again and I can still be a nurse!!

God Bless America

2006-09-11T20:35:00.000-05:00

I let the feelings just wash over me today. I don't know why this anniversary is any different from the others, but I couldn't stop thinking about it today.

All I want to say is that I still think of all of the victims, the ones who died, the ones who survived and all of us who were touched. The world cannot possibly mean the same to us but I still believe that democracy rules and I am grateful for my life in America, where dreams can come true and our way of life is enduring. I could not live anywhere else in the world. I am proud to be an American.

Fickle fingers

2006-09-09T11:01:00.000-05:00

I think I'm getting arthritis in my fingers or maybe it's so much work on the computer. I've been working on some teaching modules for the CNA classes that I teach and I'm also working on a teaching tool for oxygen users as well as health care workers.

My fingers are cramped and boy do they hurt. Of course that's not going to stop me from typing! I just read about a nurse who came home from work and found an intruder in her house and strangled him to death with her bare hands! HER fingers work just fine!

Reflections

2006-09-04T15:41:00.000-05:00

Today while taking it easy ~ no holiday shift for me ~ I have spent time thinking about where I am and how I got here. Who I am and what I want to be. I'd like to spend some time reflecting on how I became a nurse, first an LPN and then an RN and all that has led to where I am now. I know that it will take way more than one post so I hope you will perservere while I offer my spin on life and nursing.

I always wanted to be a nurse. There was something about it that spoke to my need to nurture and help people. I continued to want to be a nurse even while women burned their bra's and said "you don't have to be JUST a nurse or JUST a schoolteacher." Wow is THAT ever dating me! I never ever felt like JUST a nurse.

I remember always wanting to be like Mother Teresa, wanting to do something so big that it would save the world. It took years and years to be okay with just making a difference each day in someone's life. I'm good at that. I love nursing. That is what I do.

I was devastated when I thought last year that I would never do that again. I let stress and an inability to see my own needs get in my way...I had COPD and could just not go on in my position as a director of nursing in a LTC facility, no matter how much I loved it.

I went to nursing school straight out of high school. I went to an LPN program that ran 15 months straight, which is not being done today. I was totally unprepared. The hospital school of nursing that I went to began as a TB sanitarium. They still had a ward for patients with TB who had no place to go.

TB had been conquered and the hospital had moved on to cancer. Radical surgery and radical cases. My first patient was an elderly man and he was both OLD and CRANKY. When I found out that I had to wash his privates, I said this is not for me and quit. I had been thinking about it for a while because I had heard whispers that there was another man there with no arms and no legs and I finally SAW him. Oh no, not for me at all! That ended my parents hope for the first generation to advance in school; I just left.

The next couple of years were spent working as a receptionist, a donut maker and short order cook. Nothing made me feel like it could be my life work. I went back to the nursing school and made it this time. I found that I loved the challenge of making people feel and smell better. I say smell because cancer has a particular smell. In my early days of nursing we used to place oil of wintergreen in the rooms. That only made it worse. I can still "picture" the smell in my mind!

For the better part of 10 years I lived in a dormatory and worked in the "old san". It was a big "campus" with lots of outbuildings. We even had a seamstress who made us turn- of- the- century nursing uniforms for a celebration of Nurses Day.

The dorm life always invokes a smile when I think of it. My friends and I who worked the night shift would take off in the morning after work to go to the beach for the day; my evening shift friends and I would go to an all-night diner after they got out of work at 11pm. The laughs, the meals, the boys, the dates, the philosophical conversations! It was a memorable time for me.

I learned so many skills there. We autoclaved everything and I learned how to do treatments using a package of sterile products wrapped in a sterile (cloth) field. The instruments were not disposable and were returned each time to Central Supply for sterilizing. I learned how to talk with patients, be at ease with them, and make them at ease with me. The basics of what I would use in my future career were learned as an LPN.

In the middle of my years at the "sanitarium" as it was called in the community, I took 2 years and went to Phoenix to work and live. I worked at Good Samaritan Hospital and my future of working with patients who were dying was sealed. I will share that in my next post.

The Real World

2006-09-03T08:44:00.000-05:00

I love Sundays ~ a lazy coffee in the morning and playing with the cat. It's raining today and that's even better. I just love to stay cozy inside and listen to it rain. Ok, that's in my PERFECT world. My REAL world is that I have to go out today to get boxes so I can start packing to move. (I was given a 30-day notice by my landlord to vacate so that he can move in here). Real life can be such a drag!

But on the bright side, I am working on some training modules for nurses, CNAs and oxygen providers. Having been on the receiving end of panic breathing, I wish I knew way back when, what I know now about oxygen and breathing techniques and the equipment. My sister died of lung disease when she was just 50. I could have helped her so much more had I known pursed lip breathing and diaphramatic breathing and tips on how to focus her and talk to her to bring her breathing under control. In the real world, we just don't get enough information and learn much of it on the job.

I am going to make some more coffee and enjoy my perfect world for a while.

From out of the darkness

2006-09-02T19:02:00.000-05:00

I have been a member for a couple of months but could never access my account. I have a friend who has started a blog so I thought I'd try this again. I have some things to say, a few things to work out and a some things to share.

I hope to connect with people who are either nurses or COPDers. For me, I cannot separate the two. I am a nurse with 30 years experience who doesn't want to give up my life's work. I may be on oxygen, but I am not without passion for what I do.

I had been in a terrible depression for many months and have come out on the "other side" and I am VERY grateful to be here! With the support of family and friends, and my online family of COPD supporters, I realize that my life can move forward and be the meaningful and rewarding life that I love.

Live*Love*Laugh